Bosniak 3 kidney lesion
I have a kidney lesion 3cm big that i have been following for about 6 months. 60% of being cancer and i am sitting on it.. As i am Completely afraid of doing surgery i have chosen to follow the mass.
My question is i have a doctor who wants to do the Partial Nephrectomy. And another who wants to do thermal ablation. The second doctor seems a little concerned now and offered me this procedure, The first time i met him he stated why do surgery on something that could be benign.
So now i am more confused as to what i should do.
for those of you who have had the surgery how bad was it and would you do the thermal or cryo Ablation given the chance? And vice versa for those of you who have had thermal ablation would you do surgery instead.
I have done so much research i just do not have a clue as to what i should choose. i know that this mass will eventually have to be taken out. But i am so afraid!!!! I just can not seem to pull through this and convince myself its the best thing i can do for me..
Any advice or tips would be so appreciated..
Thank you for reading my comment..
Comments
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i had the surgery in 2016 for a lesion about half your size. I had two other open surgeries for intestinal issues before that, so my experience with the partial was that it was much easier. It’s a series of small incisions that, unlike open abdominal surgery, don’t cut through major muscle groups that hurt like a son of a…..gun…..when they start to knit back together. I checked into Stanford Hospital at noon the day of the surgery, got prepped, had the surgery at 3PM, was awakened by my niece screaming in my ear at 7PM. The nurse had me stand for a little while, then I got to sleep until morning. Had breakfast, as I was famished, saw most of the surgical team around 8, which is when the catheter and drain got removed. They gave me the results, which was 1.7cm chromophobe type RCC, with surgery being 100% curative. Surgeon came in around noon to verify everything, and released at 1:30 PM, so 25-1/2 hours in the hospital. At age 60, I took my time recovering, but the pain was minimal, particularly in comparison to the open abdominal. I never had to take any of the prescribed pain meds, but you may be different, as I have a pretty high pain threshold and a very low opinion of pain meds.
As for ablation vs surgery, I was offered the same choice, only for me the option was cryo rather than thermal. My urologic oncologist, who was the best doc of any kind I’ve ever had, said that ablation had a success rate of 95%, while surgery for my lesion size had a success rate of 99%+. The success rate was over all types of RCC because they didn’t know what specific type I had. I asked his recommendation and he said my relative youth and otherwise excellent health meant surgery was the best option. Remember this is 2016, and advancements have likely been made in ablation technology that might have increased the success rate for that treatment.
I think it’s great that you reached out to this group. There are a lot of people that have a heck of a lot more knowledge than I have. I won’t presume to make a recommendation for which treatment to get, because you need to be comfortable with your decision. I was comfortable (though still scared) about my decision to opt for surgery. And even though I was comfortable, I second-guessed myself right up until I was put under for the surgery. Human nature.
Just know that no matte4 what you choose, you’ll have people in your corner to help you through it.
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Hi. Thank you so much for your response. Cryo ablation is what was offered to me as well as thermal i have read a lot of reviews seems like a lot of people had some serious problems after the procedure even today.. Honestly Fear has taken over for me . For some reason i just can not imagine having surgery again. I promised my self no more surgeries. I have had way to many. Now at 63 i need 5 surgeries most of them orthopedic which i am putting off, i Rather deal with the pain. I am also Being followed for a pancreas cyst.
But this one the bosniack 3 has me so afraid.. I just can not shake the fear. I have no family support. My husband whom is my biggest supporter, he needs someone to help him through this moment in time. I was diagnosed after having an MRI for my back/sciatic pain so this was an incidental finding.. I went to 2 doctors for an opion the first wanted to do surgery immediately. The second told me why have surgery on something that is probably benign. I was so relieve i chose to follow. After having a recent Mri the second doctor Has now offered me to do the cryo ablation, he seems a little concerned. I am going to the first doctor in september to see what he has to say. I know that eventually i will have to have this lesion removed. But i am mentally not ready.. Trying to make a huge decision simple or major surgery. of course i know that the surgery has a better chance then the cryo ablation. I am very happy to know all turned out well for you. Gives me hope. Again thank you for your response.. Really appreciate it..
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For what it’s worth, I have serious hearing loss in one ear and profound hearing loss in the other. Aids help a little, but not much. I’ve been accepted as a candidate for a cochlear implant in the profoundly bad ear. But…..with three surgeries to my name, I, like you, just can’t get excited over another surgery, particularly one that would drill a hole in my noggin. Also, I’m a numbers guy….. math degree and MBA in finance. My first surgery was 2004. The second 2010. The kidney was in 2016. Had I done the cochlear surgery, it would have been 2022. The pattern was every six years, so I had to break it. LOL. Yeah, REALLY logical for a numbers guy, I know.
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Hi, I'm chiming in and hope my reply will help you. You're lucky you had pain and got it discovered so early! Many of us had no symptoms, and our tumors weren't found until they were larger. Mine was found when I was getting a pre-op chest CT for an unrelated surgery, and there was a lump the size and roughly same shape as an egg sitting on top of my kidney. I had a radical nephrectomy five years ago. I showed up in the morning, had the surgery , and went home the next day. It kind of felt like a horse had kicked me, but I was 68 and flabby. I still did my walking and the pain really wasn't horrible, and within a week, I was doing a lot of my regular activities, like going for nice slow walks in a local park and going out to eat afterwards. I've had 9 surgeries in my life, and this one wasn't as bad as my hip replacement - but that was also doable.
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Hi Thank you for your response. The pain i was having was in my lower back was do to a fall. They found the lesion on my kidney from the MRI taken,( incidental finding) they are also watching my pancreas. I have had 15 surgery's in my life including 2 breast surgery's i just never thought anything of them as they never dealt with an organ. This kidney surgery really has me scared.. I now need 2 knee replacements thanks to running lol. and 2 bunions to be removed thanks to wearing high heels, but those do not bother me as much as the kidney surgery. I am really having a hard time with this one... Reading story's of people who have had this surgery really does help me.. I keep asking myself why am i just sitting on this. Fear!!! I have an appointment with my urologist next week hope i ask all the right questions so i can make a clear decision and be happy with my choice. as to follow or have it taken out. Obviously going to have the surgery better results. Just about getting myself ready.. Again Thank you for your response really appreciate it.
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Wish you the best of luck on your cochlear surgery. May it be a 100% complete success. The more i research the more i am geared towards the surgery at this point. Its just getting myself there. I have had 15 surgery's in my life they have never bothered me as much as this one does. I have to have 2 knee replacements and some bunions removed again i am not as afraid of those as i am the kidney surgery.. I will figure this out just got to get past the fear that holds me back.. Story's and just talking and responses are slowly helping me. Thank you again for your response truly appreciate it.. Best of luck to you with everything..
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Hi Sunny, My Bosniak 3 cyst was similar in size to yours. I believe age is one of the factors, or if surgery is not suitable for you. I had a partial and it was open, the good thing is you will get a pathology report. I believe these days they will find out the biomarkers showing in your tumor which is very important for future treatment if needed (very small chance).
The CUA just updated their guideline, it might not apply to you if you live elsewhere but can be a good read.
Below is my story 7 years ago.
All the best!
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Hi Thank you for reaching out.. I read all the info on the link that you shared. Very interesting read. Good to know that everything worked out for you and you are doing well. Thank you for all the info that you posted proir to and After your surgery. I was set in April of this year for surgery but bailed after i got a second opinion. The doctor never gave me instructions of what to do prior to surgery. Is there anything i should do that would make it easier when i decided to pull the plunge. Right now i am still following, going to see my urologist next week, I am bringing my question before i decide what to do..
Again thank you for all the info and the link very much appreciated Sunny.
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I didn't have to do anything prior to surgery except quit smoking. And the night before surgery, no food or drink after midnight, standard for most surgeries. I got great advice from someone in a breast cancer group (which was the surgery I had two months before the nephrectomy): You don't have to be brave, you just have to show up.
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Hello Alice. Thank you for the information on what is needed prior to the procedure. Wow the comment Perfectly said. The problem with me is that i question everything, and my Brain does not stop with the, what if questions like what if they hit your bladder ext ext. After having two back surgery that got botched and having more problems i have become very fearful of all surgery's. My problem i know,. I will keep your quote in my mind on the day i finally give myself the go ahead and just do the surgery. Thank you again for reaching out to me. Really appreciate it.
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Good evening! I just had three surgeries within a 3.5 month time span…partial nephrectomy, melanoma surgery, and retinal detachment surgery (4th time.) My nephrectomy was done robotically, one night stay, and a relatively uncomplicated recovery. I too had my reservations about making my decision, but these were the things that helped me make my decision:
1. I educated myself about every possible choice I had and the benefits of each choice. I had two opinions from two different surgeons. I asked a slew of questions and asked their best professional advice based on what they saw on the scans. I asked why they picked partial nephrectomy as their #1 choice.
2. I knew from both that they believed it was cancer, so in my opinion, get it out. Don’t give it a chance to do any more damage to your body by growing and/or spreading.
3. At every appointment I had the same 3 people with me. If they couldn’t be there in person, they joined virtually. I gave es h one permission to ask whatever they wanted to ask each surgeon. I spoke to each one of these people individually after each appointment and we were all on the same page.
4. Once I made my decision I felt good about it and never questioned my decision. I was still scared but I knew I did everything I could to give myself the best chance.
My suggestion is to ask yourself why you can’t make a definitive decision, list every reason. Then start with #1 and get the answer so you are educated about your fears and you can put those fears to rest in order to help yourself make the best decision possible.
I understand your position, I walked in your shoes. I’m here to support you in any way I can!
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Hello!! Good to know that you are ok after all you have been threw. This i believe is what helps me reading positive outcomes after surgery. I wrote one of your questions down as I am seeing my 1st opinion urologist on Sept 15th. And want to be fully prepared for this up coming appointment. There is so much on my plate at the moment. I have started making a list of the pros and cons as well as why i am having a hard time getting the surgery. Part of me thinks its because they are not sure, though they say it is a 60% chance of cancer. My husband is my only support system and he does not make it easy for me as he himself has a hard time with my doing the surgery. Though he tells me to do what i feel is right for me. Your response has given me a completely different/good perspective and I Thank you! Again Thank you for your response i truly appreciate it. Sunny!
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Sunny, just want to drop you a line to wish you well at your first opinion urologist appointment tomorrow. I hope you have your list of questions ready! Write the answers down as you get them. Your mind is on overload and sometimes you will forget the answer if not written down. I know I had to ask my team to review some answers with me. If you need to talk it through or need encouragement, I am here all day/night and will check back here periodically. I know it’s a scary, overwhelming situation but you got this! Im looking forward to hearing back from you! Lots of positive thoughts and energy being sent your way!
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Thank you!! I have done everything you mentioned. My appointment went very well. I ask the doctor a lot of questions including the one in your professional opinion based on the scans. He was very fair and honest. I made a decision to go a head with the surgery which is schedule for next month. I think he feels like i am going to bail again As he was so different i completely understand his position and get why. I did ask why surgery and not cryo or thermal aplation. He told me for my circumstance surgery is the better option. I am petrified i have a whole month before the surgery which for me not good, To much time to think. I am going to get this done one way or another. Fear is not a fun feeling. Really going to need a lot of encouragement to get through the next month..
I really like to thank you for all your up lifting words tips and advice, And for helping me to be able to come to terms with what i have to do. The list idea really help.
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Sunny, you took that first HUGE step of listening to his advice and, you must have felt some type of understanding that it was the best choice for you because you agreed and scheduled the surgery. I have debilitating anxiety and experience panic attacks so bad that my arms and hands go numb and I feel like I’m having a heart attack. Things that help me are:
- talking about everything and I mean EVERYTHING
- Being educated about the type of surgery I’m having
- knowing what is going to happen, and knowing what to expect post surgery. I don’t like surprises, I like to be well prepared and ready to face whatever challenges may come my way … as much as I possibly can. Do you know what kind of surgery you are having? (Open, laparoscopic, robotic). Did the surgeon explain WHY this is the best option for you? What are the chances of the cancer returning vs. other options? What are the chances of metastasis? These are difficult pieces of information to digest but I believe it’s better to be prepared, educated, and ready to take it on. I talked with my team about every detail, and it made me feel better about everything I was up against. At the same time I was going through kidney cancer recovery , I found out I had melanoma. I did the same exact thing to prepare myself for surgery to remove the melanoma. In October I am having a double eye surgery. I found out I have a degenerative disease that is causing my retinas to detach so they (Wills Eye Hospital, Philadelphia, PA) are going to do surgery to strengthen the weak areas so they don’t tear. It’s a never ending battle with anxiety and depression but my strategy helps me to face what I’m up against. It’s one day at a time, slow and steady wins the race. You can do this, I know you can! One step at a time!
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Hi Litl18.
Thank you. I am trying , I guess the biggest part that got me was right now it only 3cm later it could be 4 or more depending on the course it could take for growth i am having a hard time with 3cm I can't imagine more. I am getting through this One day at a time. I to have anxiety and panic attacks. They gave me all the prep sheets prior to the day. Still terrifies me but i have to do this. They are following my pancreas as i have a lesion. I need to have 2 full knee replacement. and a few other surgery's. The physical surgery's i fear but for some reason not as much as my organs surgery i am hoping that nothing comes of the pancreas, I have had a few people tell me to do both knee surgery at the same time so i dont have to endure the pain twice. I have to get through the kidney first and move on to the next.
I wish you the nothing but the best of luck with all your up coming surgery's. May you have a speedy recovery and all turns out above and beyond what ever is expected and then a very long break from all surgery's moving a head!
Thank you so much for speaking with me understanding where i am coming from, giving me the tips i needed and encouragement to help me make the right decision for me. I so appreciate it!!
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I saw that you have your surgery scheduled, don't be afraid about the surgery. I still recalled I looked up the clinical database and the nephrotomy is one of the surgery that has the highest success rate. And that was 7 years ago, so the technique and technology is much better today!
The only thing that I did prior to my surgery was do some more exercise and lose some weight! Best wishes!
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Hi, So I got the call from the hospital with the date for my pr-opp. Here we go fear anxiety Pa nick fear fear fear , I hate the feeling it paralyzes me. My mind keeps saying run. I ask my husband would you be angry if i bail out again, No he said as i know he is feeling exactly like i am . Surgery is around the corner and i am scared. So as afraid as i am. I still need some advice on a few questions. not knowing what i am actually getting into is scary. They have me on a liquid diet, What kind of liquids helped you to feel some what full i suffer with migraine headaches and not eating on boy, i am not allowed to eat anything after 2pm. I am having the laparoscopic/ possible open surgery.. Thinking maybe if i know what i am getting into may help with my anxiety /fear. I know we are all different but i am very active love to go hiking walk at least 5 to 8 miles a day. On top of many other thing i like to do through out the day. When they say walk what do they mean, Can i start walking a 1/4mile after 3 or 4 days or does it take longer? Eating what was your diet after the surgery. clothing i read that where the incision is it is not comfortable to wear pants with elastic waist is this true?,
Most importantly What would you do differently to help you after the surgery?? I really really appreciate any feed back tips advice you can give me. Thank you in advance so much. Sunny
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